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I'm aware I'm giving weight to subjective SF-36 results and discounting measures that might be regarded as objective. I think in this case it's ok. As I've said, I don't think the walk test and step test are very objective. I consider myself significantly affected by my illness, but I don't...

It's been cited again in Balancing the value and risk of exercise-based therapy post-COVID-19: a narrative review, 2023, Singh, Chalder et al.

I'm sure that that sounds very reasonable to most people. But we know the quality of a lot of the "evidence" that is cited in support of the idea that exercise training programmes are useful. Here's one I hadn't seen before, but the forum did already have a thread on it: [7] Lau HM, Ng GY...

The cardiovascular performance was measured by largely subjective measures. Although some measures of musculoskeletal performance improved more in the supervised exercise group, some weren't, even after intensive training. Given that the treatments were unblinded and there was a lot of...

RESULTS Mean change 6-minute walk distance (m) Controls 614.3 + 20.7 = 635 ___ Exercise 590.7 + 77.4 = 668 Mean change Predicted VO2max (ml/kg/min) Controls 37.8 + 1.0 = 38.8 ___ Exercise 35.1 + 3.6 = 38.7 VO2 max was not actually measured, but was estimated based on a walk test and a step...

I also note that the training programme was 6 weeks long, with evaluation at the end. That is not long enough to identify any sustainable benefit. Those people with a post-viral fatigue syndrome/ME/CFS may be swapping out some of their tasks of daily living for the prescribed exercise...

I agree NP IACFSME could shut down their journal and save money. People with useful articles about ME/CFS and related topics have many better options. Editorial decisions, such as publishing one of E. Crawley's papers, have caused more harm than good. While Fred Friedberg is President, I...

I suppose the only bright side to this is that the cohort was employees from one hospital. And surely some of the participants will understand that it's highly unlikely that it was the wonders of 30 minutes spent with Christiane Waller that was responsible for any real improvement over time...

Oh dear. Nice commentary SNT.

The ambiguity of the messages continues. e.g. at 23/24 minutes on one slide: "People tend to naturally increase their physical activity when they feel better" "Exercise can be harmful to some patients with dysautonomia and should be prescribed by a health care provider that understands the...

Perhaps it is churlish of me, but noting that exercise is contraindicated in people with post-viral symptoms seems to me to be only part of the story. Where's the evidence that exercise helps fix anyone with post-viral symptoms? Near the start: Amy Mooney: "I have focussed my treatment...

In brief - this content is noncommittal but, to me, it doesn't look terrible. It doesn't sound as though the treatment of CFS has changed.

In the case of the Dubbo study, I recall that there were issues with the assessment of severity. From memory, they only assessed people a bit after the infection, so people with the beginning of persistent symptoms might have been assessed as more severe. I'd have to go back and look at the...

Nice commentary about the importance of objective measures in the introduction: Rationale and study hypothesis: Method: ICC criteria Mild - approx 50% reduction in activity Medium - mostly housebound Severe - mostly bed bound Very severe - entirely bed-bound (excluded from the study as...

PETITION UPDATE December update DEC 18, 2023 The day after our last petition update, the S4ME committee sent a letter to the Head of Governance, Cochrane Central Executive Team. You can find the letter here. In it, we queried Cochrane's earlier letter where they said first, that they were...

We've created a thread for Elise van de Putte in the Doctors section and copied a post there. The Netherlands: Paediatrician Elise van de Putte

And this is my (well, one of my) concerns with the Cochrane Exercise Review. The BPS proponents who seem to have some control over the outcome may be willing to let go of a slice of MUS, that is 'people who manage to get a diagnosis of ME/CFS', while continuing to assert that their therapies...

There is a substantial decrease of risk of MS in the HIV positive women, but the numbers of people with HIV going on to get MS are very small, even in men (and men constituted the majority of the samples). They took country of birth into account, but didn't take length of time living there...

Although the deadline has passed, UK advocacy organisations might like to check out the advertisement for health consumer studies in Coventry (see the link) . Healthwatch England - Resource for Campaign Assistance Perhaps there are similar opportunities elsewhere with HealthWatch.

I'm posting this on behalf of a member. It's good to see something positive, an initiative that values the perspective of the health services consumer. The deadline for this grant process has passed, but perhaps other regions may have different timelines? And perhaps UK ME/CFS groups might be...